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Hi it’s Emily, I’m a 23 year old woman with a condition called Ehlers-Danlos syndrome. It’s a condition that causes my body to fall apart.. the majority of my joints to dislocate, it also causes my lung’s too be too floppy so I need oxygen. I have a tracheotomy in my neck it’s my life saver as if I didn’t have the tracheotomy I wouldn’t be here. One night in hospital I started to feel my neck twitch and spasm a little then suddenly I couldn’t breath when I tried to breath in my vocal cord was stopping the air from getting into my windpipe.. I then had the crash team at my bedside intensive care doctors and ENT consultants got called in from home. My mum got told to phone my dad and my loved ones as they didn’t know if I was going to make it.. I can still see the fear in my mum’s face, she was in the parents room and she asked the nurses “she’s not going to die is she, she’s not” all the nurses could say is call her dad Karen. My life has never and will never be the same since that night.  I had to have the tracheotomy fitted at just fourteen years old. I felt like my body was failing me. I fell into a depression as I couldn’t accept myself. I didn’t even want to say the words “Ehlers-danlos” as I was so angry. I then spent over a year in hospital being extremely poorly with my lungs and having numerous amounts of surgery on my stomach. I’ve got a feeding tube in my stomach as I can’t always swallow as the food contents end up going in my lungs due to weakness resulting in pneumonia. I’m a wheelchair user due to my condition. But despite everything against me this year I’m attempting the Manchester 10k run on my 24th birthday with my big brother and my brother in law. I will be walking and when my body can’t do no more I will be pushed in my wheelchair. Most think I’m mad for doing it most say why would you put your body through that, family members wasn’t that impressed when I told them my wishes.. but my answer will always remain the same. I’ve got nothing else to lose my body fall’s apart doing nothing so I may as well do something good do something that’s going to make a change. I want to stand up to EDS for myself and for my family. Unfortunately it’s not just myself that has EDS, my whole family have it apart from my dad.. I would rather I had my difficulties a hundred times over than seeing my family suffer at time’s. My big sister has nearly lost her life several times and I’ve lost count of how many times we’ve  been at her  bedside in HDU preparing ourselves for the worst. She’s one of my best friends not just a sister and I can’t bare the thought of not having her here. Then you got my other big sister.. my best friend from day one, she spent months in hospital not being able to move her head or one side of her body due to her neck slipping out of joint. She couldn’t do anything.. she went from being an independent woman to someone that was completely bed bound totally unrecognisable at that time. It totally turn our families heart apart, doctors told us it could take up to ten years for her to learn to walk again.. thankfully she proved them wrong and eventually got moving again but still never back to her full ability. My brother has dislocations and is constantly emotionally  affected by what he sees happening to his family. Then you’ve got my beautiful mama our superwoman, she’s carried me through every single storm.. she’s worked so incredibly hard to raise so much awareness for EDS she’s really had such an amazing impact on the awareness journey. She’ll also guided me to accept my condition when I found my younger self in denial. She’s been my rock through absolutely everything.. unfortunately my beautiful mum has really deteriorated due to the ehlers-danlos 💔 I have to put it at the back of my mind because it just hurts too much to see and hear her hurt.. to see my whole world hurt and be affected in so many ways by this condition is soul destroying. My mum started to worsen with joint dislocation’s that was hard enough as we know the pain she’s going through. Unfortunately it’s deteriorated since and because of the EDS she’s started to have mini strokes that could possibly build up to a big one. It’s the most heartbreaking thing to know the one you really believed was invincible couldn’t dodge this condition. My mama is the one that holds the most passion to raise funds and awareness it’s what has always got her through bad times if one of her children are severely ill her coping mechanisms is to raise awareness and hope for a better future for everyone with EDS. She’s stayed up early hours of the morning supporting other on Emily’s life. She’s the most selfless person I know. Obviously My drive for this run is to raise vital funds for Ehlers- danlos but it’s also to show my family that no matter what life throws at us no matter how close it feels to losing one of us no matter how scary life can be we will always be ok because our strength and love will always save us. Mama this run is for you! I will be in pain I will feel like I’m going to pass out. I will struggle every step of the way but I will not give up because you never gave up on us mama you carried on no matter what. So I will do the same.. my mind will be going through everything that we’ve gone through on that run it will be my drive my heart will hurt that you’re not with me because we’re inseparable but I know how proud you’ll be. I can’t wait to see you at that finishing line. It’s also for the family members that don’t wish to be mentioned but will always be in my heart.. I will fight for them until I’ve got no more fight left in my body. I will always have you and fight for a bright beautiful future for you I will remove the obstacles that life put in our way and make sure they’re never in your way those close will know who I’m talking about my everything 💙 then you’ve got my dad the one who may not have EDS but has still been deeply affected by it.. all the pain you’ve had to witness I’ll have you right in my mind too I’ll forever be grateful that I get to call you mine.. 

It’s for the people with Ehlers-danlos syndrome and for the people that have loved ones with Ehlers-danlos syndrome it is far from easy seeing your loved ones hurt and knowing you can’t do anything for them.. this is for you all.. 

I hope everyone understands why I’m putting myself in such a risky position I’ve got nothing to lose but everything to gain.. I’ve wanted to do something since seeing my mum deteriorate then when I seen the Manchester run was on my birthday I knew that it was meant to be. I know my body will suffer but at least I’ll have something so amazing to look back on whilst I’m hurting.. I’m so excited nervous for obvious reason’s but so excited I couldn’t think of a better way to celebrate turning 24! I’m blessed to be doing this with the two I love very much and I have no doubt they will have my back all the way. I know I’ll get to that finishing line with them both. Scott and Lewis I’ll be forever grateful for you both making this possible for me thank you so much! 

It would mean the world if you could donate to this amazing cause.. please spread the word.. if you would like to have more of an insight into EDS I have a page on Facebook (Emily’s life uk Ehlers danlos syndrome)